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Comparison of two methods to determine research priorities for patients with chronic kidney disease

Condition category

Urological and Genital Diseases

Date applied

19/04/2015

Date assigned

21/04/2015

Last edited

25/08/2016

Prospective/Retrospective

Prospectively registered

Overall trial status

Completed

Recruitment status

No longer recruiting

Plain English Summary

Background and study aims The importance of involving patients, clinicians and health policy makers in decision-making processes surrounding the focus of scientific research is well known. But not many studies have looked at how the research focus is decided in the chronic kidney disease (CKD) population. The James Lind Alliance (JLA) is a non-profit organisation that brings patients, carers and clinicians together in workshops to discuss what they feel are the top 10 most important unanswered questions about the medical treatments relevant to them. People that attend the JLA workshop create a list of treatment areas they believe should be top priority in scientific research using a method called the nominal group technique (NGT). The NGT is a way of helping groups of people work together to identify a problem, create a solution and decide on the best way to go about it. The downside of the JLA/NGT workshop method is that it involves a lot of resources. It also requires participants to attend a workshop which might not always be convenient. Also, travel may be difficult for patients with chronic illness, and this may affect their ability to participate in such an event. An online wiki-based NGT may be a more cost-effective way of running workshops. A ‘wiki’ is a website that anybody can contribute to, so it may help involve a broader group of participants in online workshops. The aim of this study is to compare how well a new NGT-wiki website helps create a top 10 list of CKD-related research questions compared to the traditional, in-person NGT-workshop approach. The top 10 research priorities lists resulting from each process will be used to see whether the online method works as well as the in-person workshop method.

Who can participate?Adults who are either CKD patients, CKD-patient caregivers, CKD clinicians or CKD-related health policy makers.

What does the study involve? Participants are randomly allocated into one of two groups. Those in group 1 (intervention group) attend an in-person workshop. Those in group 2 (intervention group) have access to an online wiki-based website.

What are the possible benefits and risks of participating? There are no risks or benefits to participants.

Where is the study run from? 1. University of Calgary (Canada)2. The University of British Columbia (Canada)3. University of Alberta (Canada)4. University of Manitoba (Canada)5. University of Toronto (Canada)6. Memorial University (Canada)7. University of Western Ontario (Canada)

When is the study starting and how long is it expected to run for? September 2014 to June 2015

Additional identifiers

EudraCT number

ClinicalTrials.gov number

Protocol/serial number

Study information

Scientific title

A comparison of an in-person nominal group technique and an online wiki-based nominal group technique in chronic kidney disease research prioritization: a randomized controlled trial

Acronym

Study hypothesis

Among groups of patients with chronic kidney disease (CKD), informal caregivers', policy makers' and clinicians' use of an online wiki-based platform and nominal group technique will achieve similar CKD research priorities to an in-person nominal group technique (reference standard) as determined through comparison of the top 10 ranked research priorities lists resulting from each process.

Study design

Primary study design

Secondary study design

Trial setting

Trial type

Patient information sheet

Not available in web format, please use contact details to request a participant information sheet.

Condition

Chronic kidney disease

Intervention

Participants will be randomized into one of two groups:1. In-person workshop2. Online Wiki-based platform

Intervention type

Behavioural

Phase

Drug names

Primary outcome measures

The top 10 CKD-related research uncertainties analyzed by pairwise agreements between the two groups' priorities (provided as ranks).

Secondary outcome measures

1. Perceived engagement of participants in the prioritization process2. Participant satisfaction with the process3. Time requirements to complete the prioritization process4. Costs associated with each process

Overall trial start date

01/09/2014

Overall trial end date

25/06/2015

Reason abandoned

Eligibility

Participant inclusion criteria

Adults ≥ 18 years that belong to one of the following groups:1. Patients with CKD (eGFR < 45 mL/min/1.73 m2, not on dialysis or with a prior transplant)2. Informal caregivers of persons with CKD3. Clinicians (physicians, nurses, and allied health professionals) who care for patients with CKD4. Health policy makers (those who determine policies and practices related to health care delivery for CKD)5. Eligible participants will have high health literacy and access to a computer and internet

Participant type

All

Age group

Adult

Gender

Both

Target number of participants

37 assigned to each intervention.

Participant exclusion criteria

1. Patients with eGFR <15 mL/min/1.73 m2 and/or receiving dialysis2. Patients who have received a kidney transplant3. Persons with an underlying diagnosis of dementia or cognitive impairment4. Patients admitted to hospital or deemed unfit to travel5. Non-English speaking individuals

Alternative name(s)

Funding Body Type

Funding Body Subtype

Location

Funder name

Alternative name(s)

AIHS

Funding Body Type

private sector organisation

Funding Body Subtype

corporate

Location

Canada

Results and Publications

Publication and dissemination plan

We intend to publish the results in a nephrology journal, and aim to have this submitted by fall 2015. We will also present at conferences, including the Canadian Society of Nephrology (spring 2016) and American Society of Nephrology (fall 2016).